European Child & Adolescent Psychiatry (2022) 31:377–382

https://doi.org/10.1007/s00787-021-01832-4

REVIEW

European clinical guidelines for Tourette syndrome and other tic

disorders: summary statement
Kirsten R. Müller‑Vahl1   · Natalia Szejko2,3,4   · Cara Verdellen5,11   · Veit Roessner6   · Pieter J. Hoekstra7 ·
Andreas Hartmann8   · Danielle C. Cath9,10 

Received: 8 March 2021 / Accepted: 19 June 2021 / Published online: 10 July 2021
© The Author(s) 2021

Abstract
In 2011 a working group of the European Society for the Study of Tourette syndrome (ESSTS) developed the first European
Guidelines for Tourette syndrome (TS) published in the ECAP journal. After a decade ESSTS now presents updated guide-
lines, divided into four sections: Part I: assessment, Part II: psychological interventions, Part III: pharmacological treatment
and Part IV: deep brain stimulation (DBS). In this paper, we summarise new developments described in the guidelines with
respect to assessment and treatment of tics. Further, summary findings from a recent survey conducted amongst TS experts
on these same topics are presented, as well as the first European patient representative statement on research. Finally, an
updated decision tree is introduced providing a practical algorithm for the treatment of patients with TS. Interestingly, in the
last decade there has been a significant shift in assessment and treatment of tics, with more emphasis on non-pharmacological
treatments.

Keywords  Tourette syndrome · Tics · Comorbidities · Guidelines · Treatment · Classification

Tourette syndrome (TS)1 is a neurodevelopmental disorder
at the crossroads between neurology, neuropaediatrics, and
psychiatry. This is reflected for instance in the notion that
tics, the hallmark of TS, are the result of involuntary motor
disinhibition on the one hand, but are on the other hand, at
least in part, under volitional control and can be voluntarily
suppressed.
In 2011 ESSTS working groups have published the first
“European Clinical Guidelines for Tourette syndrome and
Other Tic Disorders” in the ECAP journal. Structured in
four parts, these guidelines summarised the best available

This article is part of the focused issue “Update of the European

clinical guidelines for Tourette Syndrome and other tic disorders”.
7
Department of Child and Adolescent Psychiatry, University
* Kirsten R. Müller‑Vahl
Medical Center Groningen, University of Groningen,
mueller-vahl.kirsten@mh-hannover.de
Groningen, The Netherlands
1 8
Clinic of Psychiatry, Social Psychiatry and Psychotherapy, Department of Neurology, Hôpital de la Pitié-Salpêtrière,
Hannover Medical School, Carl‑Neuberg‑Str. 1, Paris, France
30625 Hannover, Germany 9
Department of Specialist Trainings, GGZ Drenthe Mental
2
Department of Neurology, Medical University of Warsaw, Health Institution, Assen, The Netherlands
Warsaw, Poland 10
Department of Psychiatry, University Medical Center
3
Department of Bioethics, Medical University of Warsaw, Groningen, Rijks University Groningen, Groningen,
Warsaw, Poland The Netherlands
4 11
Department of Neurology, Yale School of Medicine, Yale TicXperts, Heteren, The Netherlands
University, New Haven, USA
5
PsyQ Nijmegen, Parnassia Group, Nijmegen, 1
  We use the term TS in these guidelines, wherever information also
The Netherlands
applies to other forms of tic disorders. Only if there are substantial,
6
Department of Child and Adolescent Psychiatry, TU well-known differences between TS and other forms of tic disorders,
Dresden, Dresden, Germany we use TS or other terms, e.g. transient or chronic motor tic disorder.

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378 European Child & Adolescent Psychiatry (2022) 31:377–382

Fig. 1  Algorithm for the treat-

ment of patients with TS based
on shared clinician patient deci-
sion making (adapted with per-
mission from [14], Springer).
TS Tourette syndrome, PT
pharmacotherapy, BT behaviour
therapy, CBM cannabis-based
medicine

evidence combined with best practice expert consensus on
the assessment and treatment of TS and related conditions:
Part I: assessment [3], Part II: psychological interventions
[17], Part III: pharmacological treatment [14], and Part IV:
deep brain stimulation (DBS) [9]. The ESSTS guidelines
have since then been used throughout Europe and have been
cited over 500 times.
In the current special section of ECAP, we present an
update of the four parts of the ESSTS guidelines published
in 2011, supplemented with a decision tree providing a prac-
tical algorithm for the treatment of patients with TS (see
Fig. 1) and a patient representative statement on research
priorities. All parts together provide a comprehensive guide-
line that covers assessment and all forms of treatments.

13
European Child & Adolescent Psychiatry (2022) 31:377–382 379
Since both empirical research findings and clinical knowl-
edge are important elements of clinical guidelines, these
guidelines therefore entail not only a thorough review of
the evidence-based literature, but also the results of a sur-
vey conducted among ESSTS experts on the assessment and
treatment of TS, which are incorporated in each part of the
current guidelines.
Recently the American Academy of Neurology (AAN)
has published a systematic review [12] as well as practice
guideline recommendations [13]—in which several ESSTS
experts participated—on the effectiveness and safety of
treatments for tics. Nonetheless, in our opinion, the present
updated European clinical guidelines have a raison d’être.
Through surveying ESSTS experts on assessment and treat-
ment in both clinical practice and research, we were able
to specifically incorporate knowledge and expertise from a
large number of European experts into the guidelines. Fur-
ther, despite overlap between Europe and the US/Canada,
there are notable differences with respect to assessment and
interventions in clinical practice. This is reflected by differ-
ences in health care use and organisation, in patient prefer-
ences and in first choice of pharmacological agents, avail-
ability and application of behavioural treatments, costs of
treatment, and approval status. In the following paragraphs
we summarise the most important conclusions formulated
in each part of the guidelines.
In Part I: assessment, we have incorporated the newly
implemented DSM-5 and ICD-11 criteria. We summarise
available literature that includes newly developed tic rating
scales and give concrete recommendations for assessments
of tics and psychiatric comorbidities in the context of both
routine practice and research. In addition, we advice how to
differentiate tics and functional “tic-like” movements and
“Tourette-like” behaviours [11]. In the DSM-5, the position
of tic disorders has remained largely the same as in DSM-
IV-TR, classifying TS as a “neurodevelopmental disorder”,
alongside attention deficit/hyperactivity disorder (ADHD),
intellectual disabilities and autism spectrum disorder (ASD).
In the ICD-11, in contrast, tic disorders have been removed
out of the ICD-10 category “Behavioural and emotional dis-
orders with onset usually occurring in childhood and adoles-
cence” and reassigned to the movement disorders section. In
our opinion, this disregards the growing body of both genetic
and clinical evidence that tic disorders are related to devel-
opmental and psychiatric disorders rather than to neurologi-
cal disorders [2, 4]. Furthermore, in our opinion, there is no
scientific evidence to support introduction of a subcategory
“Infectious or post-infectious tics” (8A05.10) in the category
“8A05.1 Secondary tics” [8]. Therefore, we do not recom-
mend assessment of children for Paediatric Autoimmune
Neuropsychiatric Disorders Associated with Streptococcal
infections (PANDAS)-related TS. Moreover, introduction
in ICD-11 of the secondary tics subcategory named “Tics
associated with developmental disorders” (8A05.1.1) leaves
room for confusion; when a person meets criteria for both
tics and ASD or ADHD, he/she can be classified as suffering
from either “Tics associated with developmental disorders”
(8A05.11), or from TS in combination with ASD. In our
opinion, current evidence indicates that tic disorders are by
definition neurodevelopmental disorders.
With respect to behavioural interventions, in part II: psy-
chological interventions, we outline substantial progress
that has been made since 2011. Most importantly, since then
several randomised controlled trials (RCTs) have been pub-
lished on habit reversal treatment in both children and adults.
As a result, behavioural treatment is currently regarded as
the treatment of choice in reducing tics. Accordingly, with
this up-date guidelines we changed the order of part II and
part III. Further, internet-based modules of established
behavioural treatments have been developed to render behav-
iour therapy more accessible. In addition, adaptations have
been made to broaden the focus of behavioural treatment
from reducing tic severity only to improving the individual’s
overall quality of life.
With respect to pharmacological treatment (part III), most
importantly, the antipsychotic agent aripiprazole has been
proven effective in the treatment of tics in large-scale RCT
[15, 19] and is currently the most frequently prescribed drug
in Europe according to the ESSTS survey. During the last
decade, three important trends can be noted. First, in con-
trast to the situation pre-2011, almost all RCTs have been
sponsored by pharmaceutical companies which clearly
increased the database but also bears the risk of bias [6].
Second, according to the AAN guidelines the traditional
Chinese medicine products 5-ling granule and Ningdong
granule have now made it to the list of compounds show-
ing moderate confidence in evidence of treatment effects.
However, we are not in accordance with this confidence for
the following reasons: (i) Investigational Medicinal Product
Dossier (IMPD) information that includes safety information
of these agents is extremely limited; and (ii) agents contain
products such as dried human placenta and therefore are
not allowed on the European market. During recent years,
several large scale RCTs have been conducted in China [14].
Although they may contain potentially important informa-
tion, they have been almost exclusively published in Chinese
[18]. Therefore, it is impossible to judge upon the quality of
these trials for readers not mastering Chinese.
Although some new pharmacological compounds are
currently under investigation to treat tics, first results were
disappointing: both the vesicular monoamine transport
(VMAT) inhibitor deutetrabenazine [16] as well as the
inhibitor of the monoacylglycerol lipase (MAGL) and selec-
tive modulator of the endocannabinoid system Lu AG06466
(former ABX-1431) [10] did not meet the primary endpoint
of tic reduction in phase 2/3 studies. Therefore, results from
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380
RCTs investigating efficacy and safety of ecopipam, a selec-
tive antagonist of dopamine D1-type receptors (ClinicalTri-
als.gov Identifier: NCT01244633), but also nabiximols, a
cannabis extract containing tetrahydrocannabinol (THC) and
cannabidiol (CBD) at a 1:1 ratio (ClinicalTrials.gov Identi-
fier: NCT03087201), are highly anticipated.
With respect to deep brain stimulation (DBS), in part
IV, we present increasing knowledge about efficacy in TS,
although numbers and sample sizes of RCTs are still very
limited. Reported effects are modest and partly even contra-
dictory with effect sizes of tic improvement between 0.36
and 1.56. European contributions to a meta-analysis [1] and
data of the International Tourette syndrome DBS Public
Database and Registry [7] have contributed significantly to
interpret the heterogeneous results [1, 7].
In order to incorporate clinical knowledge that reflects
actual clinical practice in Europe into our revised and
updated ESSTS guidelines, between October and November
2019 we conducted an online survey among ESSTS mem-
bers. This was a follow-up to a prior survey carried out in the
context of the 2011 guidelines, which allowed to capture the
changes in assessment and treatment practices over the last
decade [14]. We received responses from 59 experts from 17
different European countries predominantly from specialised
outpatient clinics seeing on average 72 (range 0–600) chil-
dren, 64 (range 0–666) adolescents, and 40 (range 0–300)
adults with tics per year. Of note, experts encompassed
child and adolescent psychiatrists (n = 20, 34%), psycholo-
gists (n = 11, 19%), adult neurologists (n = 13, 22%), and
adult psychiatrists (n = 11, 19%) (several answers missing).
Remarkably, 53% (n = 31) of experts conduct both clinical
and research work, while 34% (n = 20) work only clinically
and 10% (n = 6) are exclusively dedicated to research (sev-
eral answers missing).
While detailed results of the survey have been added to
the four different parts of the updated guidelines, here we
briefly highlight the most relevant findings: (i) there is large
agreement amongst European TS experts that in clinical
practice tic severity assessment is based on clinical judge-
ment complemented with observational and interview data
including the Yale Global Tic Severity Scale (YGTSS) [5],
the latter being the most widely used rating scale for tic
assessment both in clinical practice and research; (ii) for
the majority of ESSTS experts shared decision-making is
common practice in the treatment of patients with TS, aim-
ing to help patients to reach evidence-informed and value-
congruent medical decisions; (iii) behavioural therapy was
reported to be the first line treatment in both children and
adults with tics, but was available in only 57% of centres. In
contrast, 65% of experts consider pharmacotherapy when
requested; (iv) all over Europe, there is still a substantial
lack of trained psychotherapists so that only about half of the
patients recommended for behavioural therapy can receive
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European Child & Adolescent Psychiatry (2022) 31:377–382
it; (v) as a consequence, internet (known as telemedicine or
telehealth) as well as group-based treatment strategies are
being introduced in clinical routine practice. Fortunately,
different RCTs are currently ongoing investigating the effi-
cacy of different kinds of internet-delivered behavioural
therapy; (vi) the majority of experts recommends pharma-
cotherapy when behavioural therapy has been unsuccess-
ful (72%) or in combination with behavioural therapy for
severely affected patients (89%); (vii) compared to 2011,
ESSTS experts have shifted from risperidone to mostly using
aripiprazole as a first-line therapy followed by risperidone,
clonidine, guanfacine (children) and topiramate (adults),
respectively; (viii) remarkably, haloperidol, although being
the only officially licenced drug for tic treatment in most
European countries, is no longer used as a preferred drug
by European experts (used by 6 (10%) experts in children/
adolescents and 7 (12%) in adults, respectively); (ix) ESSTS
experts consider DBS only in carefully selected and other-
wise treatment-refractory patients corresponding to fewer
than 3% of all patients. Although introduced already in 1999,
DBS is still offered in only about 25% of highly specialised
TS clinics.
Finally and uniquely, a paper by patients representa-
tives in Europe who conducted a world-wide survey among
patient advocacy groups, describes the patient perspective
on different research topics. Unsurprisingly, three quarters
of the 2000 respondents indicated that they would prefer
research into the topic “how to treat TS and/or decrease
symptoms”.
In conclusion, our revised ESSTS guidelines contain
updated information on recent developments on assessment
and treatment of TS, combined with a patient representative
statement, which expresses the close and fruitful collabora-
tion between advocacy groups and experts in the ESSTS
community.
Acknowledgements  We thank all TS patients and TS Advocacy
Groups for their contribution in the functioning of ESSTS, participa-
tion in research as well as having supported these guidelines with a
patient representative statement.
Author contributions  Conception: KRMV, DCC; literature search:
KRMV, DCC, NS; writing of the first draft: KRMV, DCC, NS; revi-
sion: KRMV, DCC, NS, AH, PJH, CV, VR.
Funding  Open Access funding enabled and organized by Projekt
DEAL.
Declaration 
Conflict of interest  KMV has received financial or material research
support from EU (FP7-HEALTH-2011 No. 278367, FP7-PEO-
PLE-2012-ITN No. 316978) DFG: GZ MU 1527/3-1 and GZ MU
1527/3-2, BMBF: 01KG1421, National Institute of Mental Health
(NIMH), Tourette Gesellschaft Deutschland e.V. Else-Kröner-Frese-
European Child & Adolescent Psychiatry (2022) 31:377–382 381
nius-Stiftung, GW pharmaceuticals, Almirall Hermal GmbH, Abide
Therapeutics, and Therapix Biosiences. She has received consult-
ant’s honoraria from Abide Therapeutics, Boehringer Ingelheim In-
ternational GmbH, Bionorica Ethics GmbH, CannaMedical Pharma
GmbH, Canopy Grouth, Columbia Care, CTC Communications Corp.,
Demecan, Eurox Deutschland GmbH, Global Praxis Group Limited,
IMC Germany, Lundbeck, Sanity Group, Stadapharm GmbH, Synen-
dos Therapeutics AG, and Tilray. She is an advisory/scientific board
member for CannaMedical Pharma GmbH, Bionorica Ethics GmbH,
CannaXan GmbH, Canopy Growth, Columbia Care, IMC Germany,
Leafly Deutschland GmbH, Sanity Group, Syqe Medical Ltd., Thera-
pix Biosciences Ltd., and Wayland Group. She has received speaker’s
fees from Aphria Deutschland GmbH, Almirall, Cogitando GmbH,
Emalex, Eurox Deutschland GmbH, Ever pharma GmbH, Mein-
hardt Congress GmbH, PR Berater, Spectrum Therapeutics GmbH,
Takeda GmbH, Tilray, Wayland Group. She has received royalties
fromDeutsches Ärzteblatt, Der Neurologie und Psychiater, Elsevier,
Medizinisch Wissenschaftliche Verlagsgesellschaft Berlin, and Kohl-
hammer. She served as a guest editor for Frontiers in Neurology on the
research topic “The neurobiology and genetics of Gilles de la Tourette
syndrome: new avenues through large-scale collaborative projects”,
is an associate editor for “Cannabis and Cannabinoid Research” and
an Editorial Board Member of “Medical Cannabis and Cannabinoids”
und “MDPI-Reports” and a Scientific board member for “Zeitschrift
für Allgemeinmedizin”. NSZ has no conflicts to declare. DC has re-
ceived financial support from EU (FP7-HEALTH-2011 No. 278367;
FP7-PEOPLE-2012-ITN No. 316978), from VCVGz, and from Tou-
rette Association of America. AH has received financial or material
research support from the Association Française pour le syndrome de
Gilles de la Tourette (AFSGT). He has received consultant’s hono-
raria from Lundbeck and Noema Pharma. VR has received payment
for consulting and writing activities from Lilly, Novartis, and Shire
Pharmaceuticals, lecture honoraria from Lilly, Novartis, Shire Phar-
maceuticals, and Medice Pharma, and support for research from Shire
Pharmaceuticals and Novartis. He has carried out clinical trials in co-
operation with the Novartis, Shire, Servier and Otsuka companies. PJH
has received a honorarium for an advisory board meeting of Shire.
NSZ and CV have no conflicts to declare.
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